Week 24

7/23:

Hello friends,

I have started this post so many times; there has been so much going on!!

The most recent & immediate update is that I’m in the hospital again with another pneumonia. This has really sucked and has been scarier than previous times because I’ve had more significant breathing difficulties and had to be on oxygen. Also, this was such a surprise given that I’m TOTALLY DONE WITH CHEMO (!) and I definitely thought that stuff like this was a thing of the past. However, I’m off oxygen now, feeling more like myself, and should hopefully be headed home today!

Here’s the rest of the post that I wrote last week with some tweaks at the end:

 7/1:

Hope everyone is having a good summer so far!

Sharing some photos of our weekend getaway which was so special and much needed. Archie is amazing but very exhausting lately, and it was so lovely to have some time to ourselves. We’re planning fun activities with friends and a vacation to North Carolina this August, as well as a trip to the UK in October - lots to look forward to!

Treatment-wise, some things are up in the air. We found out that because my response to chemo was SO good, surgery is back on the table. The research base on surgery for metastatic breast cancer is really mixed. There’s some evidence that removing the primary tumor may impact the cancer at the metastatic sites - as in, this happened in some cases but didn’t make a difference in others. There are inherent risks to any surgery, and the prospect of additional pain and discomfort does not fill me with joy. The good news is that there’s no rush for us to determine next steps. We’ve decided it’s time for a formal ‘second opinion’ at another hospital so we’ll head to NYC on August 5 to get a consult at Memorial Sloan Kettering.

In the meantime, I’ll continue taking Herceptin and Perjeta every three weeks for as long as it’s working (this will be given as an injection called Phesgo, rather than an infusion as it was before). The doctor told us that the median amount of time people are on HP is around 5 years, and because I’m young and generally healthy, plus I had such a good response to the initial treatment, this will hopefully be longer for me. At the point that it does stop working, which will come eventually, there are many other treatments we can pivot to and that number will also hopefully grow as the research on MBC continues.

The TL:DR of the rest of this is that I’ll also be starting three more drugs along with the Phesgo, which may carry more side effects, although less than the chemo. For those interested, I’ll be starting a medication called goserelin, or zoladex, which is an injection given every 4 weeks, which will trigger menopause, and later I’ll start an aromatase inhibitor called anastrozole to further suppress the production of estrogen. Finally, I’ll start a targeted cancer therapy drug called Ibrance. Both the anastrozole and the Ibrance are taken as pills at home, but the Ibrance will require monitoring via blood work every two weeks at least in the beginning.

Not going to lie, it’s daunting to think about going to an appointment every two-three weeks for the rest of my life. I am actually going to be at the hospital for appointments MORE frequently than I was during chemo (blood work every two weeks, Phesgo every three weeks, Zoladex every four weeks) and that’s a lot to process.

I’m also freaking out about all the potential side effects from the new meds, from the hot flashes and mood swings associated with menopause to the potential long-term stuff like cardiac toxicity. George is good at reminding me that side effects aren’t guaranteed and that I’ll hopefully tolerate the meds well - and if I don’t, there are other formulations or similar medications that we can try instead.

I’m wishing so badly that I could just have surgery and be done, but this will be a chronic condition that I’ll have to learn how to manage. It’s especially hard because people assume breast cancer is something you go through once and then you’re done. I don’t want to be the downer that has to explain that actually, this will never be “done” for me.

Up until this week, I had been feeling pretty good physically the further I got from chemo. I started both Phesgo and Zoladex Monday 7/20, and fortunately the docs don’t think my fever/pneumonia was related to starting these treatments. The Phesgo was a bit painful as it’s given over five minutes but the Zoladex was a pretty quick pinch, and I’ll take them both over a chemo infusion. I’m ready to build back the strength and stamina I had prior to chemo! I’m also feeling good about getting the second opinion set up, so we can get more clarity on next steps.

Thanks for reading!

Lisa